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Outgrown Epilepsy

I am 36 years old and had my last seizure at the age of 14. It was probably what is now being called BRE but it was always called a petit-mal/temporal lobe cross when I was young. I was on many medications from phonbarb to Dilantin and Depakene and zorontin (sp?). It was an odd thing as I outgrew it twice. I went off meds at about 5 years old after having seixures for about 2 years, only to go back on them when I hit puberty in the 6th grade. When I began meds the second time I was having (according to my mom) 100-200 seizures per day even on meds. Needless to say I was not the most popular kid at school.My question is, now that I have not taken any meds for over 20 years and have been seizure free for as long, are the sleep crashes, anxiety, sleep deprivation and foggy feelings (I have had the foggy feelings for as long as I can remember) related to my epilepsy history? Is there some research out there That I can look into? I have looked on the internet but I have not found anything specific to what I am looking for.Tracy

Comments

RE: Outgrown Epilepsy

hi tracey, i just read an excellent article about something called transient cognitive impairment in the december issue of the lancet neurology and BRE was mentioned. the context being that BRE is not neccessarily that benign and that there can be advantages to treating it ( and epileptiform activity in the absence of overt seizure manifestation). high seizure loads or extreme seizures can cause permanent damage. do you have health insurance?what do you mean by sleep crashes?it sounds like you could use a thorough neuro exam. you could be having nocturnal seizure activity and that could account for most of what you describe. nocturnal seizures are very common - the brain is extremely active when we sleep.i tried posting links the other time i posted - but they didn't show up as links and the spacing i made in my post also did not show.so i will only provide one link .... http://members.nuvox.net/~on.jmorgan/

RE: Outgrown Epilepsy

Tibet2,Thanks for your reply! I took a look at the link sites that you sent and I now think that maybe BRE is not correct, I don't know. I just remember my mom always saying "petit-mal/ temporal lobe cross". But the "sleep crashes" are periods every so many years, when after pushing myself for so long I have just crashed into sleep where I would sleep for about 24-36 hours straight! I am long overdue! I have health insurance and have been pursuing this as a depression episode until this weekend when I read something that possibly connected the depression (which I knew could have sleep issues)with the epilepsy. And since I spent many years in a sort of denial state, All of my personal epilepsy knowledge is in hind sight.I am currently on 20 mgs of adderall per day to give me some "pep in my step" since I spent the months of June through November in a state where I was practically unable to to move except to get my children off to school. The adderall has helped but I am still having sleep issues. IMy concern about a thorough neuro exam is that being a teacher of children with severe special needs one learns which neurologists have the best rep among the parents. And from my perspecitove the choices are not good. Any suggestions?

RE: Outgrown Epilepsy

hi, i get how this works! i click on the message and get to see it with spaces and paragraphs! what can i say? not bad for the last of the luddites (and what is a luddite doing with a computer you might ask? that's another story...)my insurance is very limited and i try to remember to count my blessings that i even have insurance. my new neuro is better than my old neuro and that's progress. you sound pretty nervous about a neuro consult - especially when you don't hear great things about the local neuros. maybe the children see docs who specialize in pediatric neurology..... so maybe there is a great neuro out there who sees adults. otherwise i would maybe try for one who is easy to talk to. it might sound lame - but neurologists are all smart people - so all things being equal - find one you can talk to easily. at least you will enjoy the visit.you shouldn't be this tired - i've never slept that long in my life.....maybe you should start with a very thorough physical to rule out other problems and to talk to your doc about who s/he thinks a good neuro is.i know someone you should post to - jeff morgan - whose site is in my last post.... go to support boards and then go to debraboard and he will answer questions about sleep.... he knows a lot about it. he's been interested in it for a very long time. you know you had seizures as a kid but you might never know for sure what kind you had. the past is past and today's problem is the one you need to do something about. it seems as though you are likely still having at least nocturnal seizures and with today's technology and research there is so much more that a neuro can tell you than when you were a child. and treatment options are much beter than they were in the past. a neuro can probably give you a better guess than that "hybrid" seizure type your mom was told you had. you'll be amazed at the tools docs have now. you are definitely due a good neuro examination - and while part of you might dread it - i think there is also a part of you that wants to feel better. and i think it is extremely likely that you can feel better than you feel now. if you can't do it for you, then think of your children and do it forr them. i don't know how old your children are - but teens need you just as immediately as toddlers - so you have a lot of responsibility regardless of your children's ages. change is difficult - sometimes it seems like the misery we have is better than the uncertainty of the unknown. but it really isn't..... there is a way out of this for you.... but you will need the help of a doctor.if your case is too complicated then a general neuro should refer you to a neuro specialist. a neuro who specializes in epilepsy is called an epileptologist. are you aware that TLE affects the limbic system.... emotions... big time?and i don't know how old you are - but i am assuming you are a woman - but women with TLE go through menopause on average - sooner than women without E.... i have been so surprised to find women on other support boards who are perimenopausal in their early 30s (that's early - even for TLE - but i have seen it several times) and are unable to concieve because of premature ovarian failure..... but menopause can also affect emotions..... i know you wanted answers - and all i gave were considerations and possibilities....it might take awhile to figure out what is happening and how to fix it. let me know what you plan to do....

RE: Outgrown Epilepsy

There is that word again! I hhe a friend that uses the word "luddite" and everytime she uses it I cannot retain the definition! I remember the conversation -its a de ja vu thing every single time-I just cant keep the definition in my head!Anyway, I think one of the things I plan to do is ask my psychiatrist what he thinks about all of this when I see him on Tuesday. I also want to ask him about contacting the local sleep clinic. Since they do so much monitoring surely I can get an EEG there.My sister recently got a second opinion on what her neurologist said (he happened to be the one with the absolute worst rep that I am aware of). She likes her new one and he has changed her meds completely (she has migraines and asthma) and she has lost over 20 pounds in 2 months. She still has some to lose but she seems to be much better.Then there are a couple of nerologists that happen to be friends of my mother. I cannot bear the thought of even going there. I love my mom (she has some prominence here) but this town is not big enough for the two of us in some ways- if you know what I mean. (I guess I am really anxious about this visit). I know you are using E for Epilepsy but what does the TLE stand for? MY sleep deprived brain is not functioning well.I will check out the Jeff Morgan thing and the debraboard. But I need to discusss this all with my psch and find out what effect the adderall is having on me to. I have only been taking it for about a month and a half ( the sleep thing has been going on since the end of last spring or the beginning of summer). So I only know that I ahve to get this fixed before I begin my Ed.S program in the summer.Ta-ta for nowTracy

RE: Outgrown Epilepsy

luddites are people who are mistrustful of technological inventions and advances. the name comes from the british movement in the early 1800s dedicated to halting the industrial revolution - it was a violent movement - but i don't know that the word still has those connotations today.... at least not in england. and not the way i hear it used.... it seems to mean people who can't be bothered to learn to program their vcr or whatever.but to get back to your problem.... you shouldn't be feeling as bad as you do. and i think everyone would agree with that.getting in for a sleep study would be great. two alpha females in the same family and the same town? that can be tough... but don't let that get in the way of treatment.change is scarey but sometimes neccessary. i need to change my meds because i have some obscure and very painful side effects from long terrm mysoline use (metabolizes to phenobarb) and i have been thinking about it for a couple of years and am just now ready for the change (i have seizure control - so it's a hard thing to risk giving up - but i've been supplementing with triletpal for the last couple of years) . i didn't look that long and hard - but your med is an amphetamine and i thought it would be contra-indicated for seizures - but i didn't see that warning off hand.....that doesn't mean it isn't out there - it just means i didn't see it.....so epilepsy.com can step in any minute now and give some advice on that.....post to jeff.... a lot of people double post on more than one support board.... and it's totally kosher.... sometimes there is someone on a given board who are very knowledgable about a given subject. jeff's very good at sleep. he's not a "handholder" but is very consistent and will point you in the right direction for reading.TLE - temporal lobe epilepsySPS - simple partial seizureCPS - complex partial seizureTCS - tonic clonic seizurehere's an article many people with TLE really relate to....http://www.psychiatrictimes.com/p950927.htmlsee what you think... and maybe your psychiatrist would be interested in it as well.... it has one of the best approaches for dealing with some of these surreal E experiences that i have seen...."Often such details must be elicited by careful, tactful questioning, because the patient will be reluctant to describe the experience; its intensity and bizarre nature arouses fears of insanity. The physician frequently can sidestep this reaction by asking: "Have your episodes ever involved anything strange?" with a lack of emphasis on the word strange, thereby suggesting that strange experiences are not at all unusual with these kinds of seizures. Another approach is to say: "On occasion persons who have experienced some of the things you have told me about have described other experiences they have been reluctant to discuss because they were afraid other people, even their doctors, might think them crazy." Questions about specific epileptic experiences should be delayed until the end of the interview to avoid suggestibility. "i think we all want a neuro with that approach. i once had one like that and would love to have one like that again and i think i am on my way toward that kind of a relationship with my new neuro. i do think that the doctor-patient is a two way street and that a patient has responsibility to make the relationship work (just as the doc does) and to be forthcoming with the doc. that means not just saying what you think the doc wants to hear... it means thinking about things before you go in for a visit and being organized, keeping a seizure (or migraine or whatever) log.... reading on your own..... good luck with the education degree. what exactly does Ed.s stand for?

RE: Outgrown Epilepsy

Tracy, quick question, have you ever had an MRI? I too have temporal lobe epilepsy and have suffered much of what have.

RE: Outgrown Epilepsy

No I have never had an MRI. My psych thought the sleep clinic thing was interesting but he said we would discuss it and some other things in further detail in a couple of weeks as we were running out of time. I believe he thinks that it might be something psychological. (My mother caused me tremendous panic last spring when I was taking a nap one sunday afternoon- she came by and took my kids and their bikes without leaving a note or message of any kind). In the meantime, he has added effexor to my meds (which I have yet to get filled due to lack of funds). But, I must say that last night I actually got in bed about 10:30 and WENT RIGHT TO SLEEP! YAHOO! I slept till 7:00 but I could have slept longer!It was the best night's sleep I can remember in sooooooooooo long!Why? Have you had an MRI? I have been seizure free and med free for over 20 years. I had an EEG about 10 or 15 years ago and all was fine then.